DEMOGRAPHICS AND CONSENT

Please ensure that you have read the participant information sheet before you consent for this project.

Your participation is voluntary

Your participation in this study is completely voluntary and there will be no cost to you. If you do not want to take part in this study, you do not have to. You should feel under no obligation to participate in this study. Choosing not to take part in this study will not affect your current and future medical care in any way.

Key things to know:

Your confidentiality and privacy will be maintained at all times
You can withdraw from the project at any time and do not have to give any reason for withdrawing
All data will be stored in a secure manner
The information you provide will not be revealed to anyone except the research staff directly involved in this study
You will need to provide your medicard details to complete the survey

Consent Form - Adult providing own consent

Title: National Endometriosis Clinical and Scientific Trials (NECST) Registry and Biorepository
Short Title: NECST Registry and Biorepository
Protocol Number: 62508
Project Sponsor: University of New South Wales
Coordinating Principal Investigator / Principal Investigator: Professor Jason Abbott

Declaration by Participant

I have read the Participant Information Sheet or someone has read it to me in a language that I understand.
I understand the purposes, procedures and risks of the research described in the project.
I have had an opportunity to ask questions and I am satisfied with the answers I have received.
I freely agree to participate in this research project as per my indicative consent of each component below and understand that the information collected will be stored indefinitely, unless otherwise notified, and that I am free to withdraw from any or all of these components of participation in the Registry at any time without affecting my future health care.
I understand that I will be given a signed copy of this document to keep.

I consent to participating by completing baseline survey data collection and having these data recorded securely in the Registry, so it is available for future related research use. I understand these data may be analysed and reported in de-identified statistical reports or approved research studies using data released from the Registry.*

YesNo

I consent to the collection of tissue/fluid and blood/urine samples (if available) and their use in future research in Australia and overseas.*

YesNo

I consent to my clinician uploading details of my medical care and treatment to the Registry, so it is available for future related research use. I understand these data may be analysed and reported in de-identified statistical reports or approved research studies using data released from the Registry.*

YesNo

I consent and authorise the NECST Registry research team to contact my specialist (details below) on my behalf for the purpose of research and accessing only the below listed clinical and health information related to my endometriosis and/or adenomyosis care.*

YesNo

Any past operation reports (from the surgeon) including any images of surgery;
Pathology results from any gynaecological procedures (biopsies from tissue removed at surgery);
Ultrasounds or MRI reports. If there are multiple scans over many years, please provide scans from the last 24 months;
Any correspondence in regard to my current gynaecological issues.

Name of specialist*

Specialist address

Street Address

Street Address Line 2

CityState / Province

Postcode

Specialist telephone

Please enter a valid phone number.

Email

example@example.com

I consent to receiving regular contact from the Registry and requests to complete further survey data collection and having these data recorded securely in the Registry. I understand these data may be analysed and reported in de-identified statistical reports or approved research studies using data released from the Registry.*

YesNo

I consent to linking my data, stored on the NECST registry, with the following National, State and/or Commonwealth datasets: (i) Admitted Patient Data Collection (APDC), Victorian Admitted Episodes Dataset (VAED) – this data set contains information about your hospital visits, including emergency; (ii) Deaths databases which include: the Registry of Births, Deaths, and Marriages, National and/or State Death Index; (iii) the Cause of Death Record Unit File (COD RUF) – provides information related to deaths and causes of death; (iv) Activity Based Funding and District and Network Returns (ABF-DNR) – used to understand costs associated with in- and out-patient and emergency department activities; (v) Victorian Elective Surgery Information Systems (ESIS) – provides data on surgical treatments relative to the diagnosis for patients in Victoria; (vi) Australian Longitudinal Study of Women’s Health (ALSWH) – Australia’s longest running population-based study exploring the factors of women’s health and wellbeing across the lifespan;(vii) the Australian and New Zealand Assisted Reproduction Database (ANZARD) – provides data on all assisted reproductive technology treatments undertaken in Australia and New Zealand.*

YesNo

I consent to my clinician providing details of any clinical specimens taken from me for biobanking, previously or in future, to the Registry, to enable researchers to invite me to participate in future approved endometriosis research projects where my specimen (if available) may be of use.*

YesNo

I consent to the Registry providing my contact details securely and confidentially to approved researchers for the purpose of inviting me to participate in endometriosis related research studies, including future ethically and scientifically approved data linkage studies.*

YesNo

If yes, my preferred means of contact is:*

EmailPhone

I consent to the Registry contacting Services Australia to access my Medicare and/or PBS claims history.*

YesNo

*Note: Please complete the additional Services Australia Participant Consent form

DEMOGRAPHICS AND CONSENT

PATIENT DETAILS

CONSENT

DEMOGRAPHICS

MEDICARE CARD DETAILS

SECONDARY CONTACT

ETHNICITY, ANCESTRY AND LANGUAGE

EDUCATION, EMPLOYMENT AND OCCUPATION STATUS

MARITAL STATUS AND GENERAL HEALTH